Leicester Frith Hospital

BACKGROUND: The Mini Mental State Examination (MMSE) is a cognitive test that is commonly used as part of the evaluation for possible dementia. OBJECTIVES: To determine the diagnostic accuracy of the Mini-Mental State Examination (MMSE) at various cut points for dementia in people aged 65 years and over in community and primary care settings who had not undergone prior testing for dementia. SEARCH METHODS: We searched the specialised register of the Cochrane Dementia and Cognitive Improvement Group, MEDLINE (OvidSP), EMBASE (OvidSP), PsycINFO (OvidSP), LILACS (BIREME), ALOIS, BIOSIS previews (Thomson Reuters Web of Science), and Web of Science Core Collection, including the Science Citation Index and the Conference Proceedings Citation Index (Thomson Reuters Web of Science). We also searched specialised sources of diagnostic test accuracy studies and reviews: MEDION (Universities of Maastricht and Leuven, www.mediondatabase.nl), DARE (Database of Abstracts of Reviews of Effects, via the Cochrane Library), HTA Database (Health Technology Assessment Database, via the Cochrane Library), and ARIF (University of Birmingham, UK, www.arif.bham.ac.uk). We attempted to locate possibly relevant but unpublished data by contacting researchers in this field. We first performed the searches in November 2012 and then fully updated them in May 2014. We did not apply any language or date restrictions to the electronic searches, and we did not use any methodological filters as a method to restrict the search overall. SELECTION CRITERIA: We included studies that compared the 11-item (maximum score 30) MMSE test (at any cut point) in people who had not undergone prior testing versus a commonly accepted clinical reference standard for all-cause dementia and subtypes (Alzheimer disease dementia, Lewy body dementia, vascular dementia, frontotemporal dementia). Clinical diagnosis included all-cause (unspecified) dementia, as defined by any version of the Diagnostic and Statistical Manual of Mental Disorders (DSM); International Classification of Diseases (ICD) and the Clinical Dementia Rating. DATA COLLECTION AND ANALYSIS: At least three authors screened all citations.Two authors handled data extraction and quality assessment. We performed meta-analysis using the hierarchical summary receiver-operator curves (HSROC) method and the bivariate method. MAIN RESULTS: We retrieved 24,310 citations after removal of duplicates. We reviewed the full text of 317 full-text articles and finally included 70 records, referring to 48 studies, in our synthesis. We were able to perform meta-analysis on 28 studies in the community setting (44 articles) and on 6 studies in primary care (8 articles), but we could not extract usable 2 x 2 data for the remaining 14 community studies, which we did not include in the meta-analysis. All of the studies in the community were in asymptomatic people, whereas two of the six studies in primary care were conducted in people who had symptoms of possible dementia. We judged two studies to be at high risk of bias in the patient selection domain, three studies to be at high risk of bias in the index test domain and nine studies to be at high risk of bias regarding flow and timing. We assessed most studies as being applicable to the review question though we had concerns about selection of participants in six studies and target condition in one study.The accuracy of the MMSE for diagnosing dementia was reported at 18 cut points in the community (MMSE score 10, 14-30 inclusive) and 10 cut points in primary care (MMSE score 17-26 inclusive). The total number of participants in studies included in the meta-analyses ranged from 37 to 2727, median 314 (interquartile range (IQR) 160 to 647). In the community, the pooled accuracy at a cut point of 24 (15 studies) was sensitivity 0.85 (95% confidence interval (CI) 0.74 to 0.92), specificity 0.90 (95% CI 0.82 to 0.95); at a cut point of 25 (10 studies), sensitivity 0.87 (95% CI 0.78 to 0.93), specificity 0.82 (95% CI 0.65 to 0.92); and in seven studies that adjusted accuracy estimates for level of education, sensitivity 0.97 (95% CI 0.83 to 1.00), specificity 0.70 (95% CI 0.50 to 0.85). There was insufficient data to evaluate the accuracy of the MMSE for diagnosing dementia subtypes.We could not estimate summary diagnostic accuracy in primary care due to insufficient data. AUTHORS' CONCLUSIONS: The MMSE contributes to a diagnosis of dementia in low prevalence settings, but should not be used in isolation to confirm or exclude disease. We recommend that future work evaluates the diagnostic accuracy of tests in the context of the diagnostic pathway experienced by the patient and that investigators report how undergoing the MMSE changes patient-relevant outcomes.

BACKGROUND: Previous studies of weight problems in adults with intellectual disability (ID) have generally been small or selective and given conflicting results. The objectives of our large-scale study were to identify inequalities in weight problems between adults with ID and the general adult population, and to investigate factors associated with obesity and underweight within the ID population. METHODS: We undertook a population-based prevalence study of 1119 adults with ID aged 20 and over on the Leicestershire Learning Disability Register who participated in a programme of universal health checks and home interviews with their carers. We performed a cross-sectional analysis of the register data and compared the observed and expected prevalences of body mass index categories in the ID and general populations using indirect standardisation for age. We used logistic regression to evaluate the association of a range of probable demographic, physical, mental and skills attributes with obesity and underweight. RESULTS: In those aged 25 and over, the standardised morbidity ratio (SMR) for obesity was 0.80 (95% CI 0.64-1.00) in men and 1.48 (95% CI 1.23-1.77) in women. The SMR for underweight was 8.44 (95% CI 6.52-10.82) in men and 2.35 (95% CI 1.72-3.19) in women. Among those aged 20 and over, crude prevalences were 20.7% for obesity, 28.0% for overweight, 32.7% for normal weight and 18.6% for underweight. Obesity was associated with living independently/with family, ability to feed/drink unaided, being female, hypertension, Down syndrome and the absence of cerebral palsy. Underweight was associated with younger age, absence of Down syndrome and not taking medication. CONCLUSION: Obesity in women and underweight in both men and women was more common in adults with ID than in the general population after controlling for differences in the age distributions between the two populations. The associated factors suggest opportunities for targeting high-risk groups within the ID population for lifestyle and behaviour modification.

The total number of adults with Down's syndrome living in Leicestershire, ascertained by widespread enquiry, was found to be 378. Of these, 371 were matched with adults with mental handicap due to other pathologies, on the basis of age, sex, and type of residence. Those with Down's syndrome were found to have a different spectrum of mental disorders from those without the syndrome. In particular, Down's syndrome patients were more likely to have been diagnosed as having depression and dementia; the controls were more likely to have been diagnosed as suffering from conduct disorder, personality disorder, or schizophrenia/paranoid state. The same proportion of each group had been given a diagnosis of autism.

BACKGROUND: UK policies aim to facilitate access to general psychiatric services for adults with intellectual disability (ID). If this is to be achieved, it is important to have a clear idea of the characteristics and proportion of people with ID who currently access specialist psychiatric services and the nature and extent of psychiatric disorders in this population. METHODS: A cross-sectional study was carried out on all adults with ID using specialist services in Leicestershire and Rutland, UK, between 2001 and 2006. Characteristics of individuals seen by psychiatric services and the nature and prevalence of psychiatric disorders were investigated. RESULTS: Of 2711 adults identified, 1244 (45.9%) accessed specialist psychiatric services at least once during the study period. Individuals attending psychiatric services were more likely to be older and to live in residential settings; they were less likely to be south Asian or to have mild/moderate ID. The prevalence of psychiatric disorders among the total study population was 33.8%; the most common disorders were behaviour disorder (19.8%) and autistic spectrum disorders (8.8%). Epilepsy was highly prevalent (60.8%) among those attending psychiatric services without a mental health diagnosis. Behaviour disorders and autistic spectrum disorders were more common in men and in adults with severe/profound ID, whereas schizophrenia and organic disorders were more common in women and in adults with mild/moderate ID. Depression was also more common in women with ID. CONCLUSIONS: Psychiatric disorders and specialist health problems are common among adults with ID and the profile of psychiatric disorders differs from that found in general psychiatry. Close collaboration between general and specialist service providers is needed if the current move towards use of general psychiatric services in this population is to be achieved. The measures should include a clear care pathway for people with ID and mental health problems to facilitate the smooth transfer of patients between specialist and generic mental health services and arrangements for joint working where input from both services is required. The commissioning framework for such processes should be in place with appropriate pooling of resources.

BACKGROUND: Maladaptive behaviours are frequently present in individuals with learning disabilities; however, their prevalence varies between studies and the aetiology, classification and most appropriate management of such behaviors remain unclear. The aims of the study were twofold: firstly to determine the prevalence of maladaptive behaviours, and secondly to develop a classification typology. METHOD: A population of 2202 adults with learning disabilities was surveyed to determine the prevalence of maladaptive behaviours. These were subjected on the basis of 13 behavioural characteristics to cluster analysis. The clusters were further examined in respect of secondary variables. RESULTS: Over 60% of individuals demonstrated the presence of at least one maladaptive behaviour and in 40% this problem was of either severe degree or frequent occurrence. Men were more likely to demonstrate physical aggression, property destruction, tantrums and verbal abuse than women. Although some severe maladaptive behaviours diminished with age, many persisted through all age groups. Six behavioural clusters were devised which demonstrated face validity and which differed in respect of demographic and developmental variables, and the prevalence of maladaptive habits and autistic symptoms. CONCLUSIONS: These findings demonstrate a high prevalence of maladaptive behaviours and 'objectionable habits' among people with learning disabilities. A classification of behavioural symptoms may be possible on the basis of symptom clusters.

In a double-blind trial lasting 4 months in 42 mentally handicapped patients, the effect of lithium on aggression was assessed in comparison with placebo. In the lithium-treated group, 73% of patients showed a reduction in aggression during treatment. There were significant differences in mean weekly aggression scores and in the frequency of aggressive episodes between the lithium and placebo groups. Side-effects were noted in 36% of the lithium group (and 20% of the placebo group), but were mainly transitory. There were no episodes of toxicity, and no patients had to be withdrawn from the trial. Lithium appears to be worth a 2-month trial in such patients, where repeated aggression has not been relieved by more appropriate placement, occupation or company.

BACKGROUND: Though contentious, the diagnosis of personality disorders in persons with learning disability is clinically relevant because it affects many aspects of management. AIMS: To examine published literature on the diagnosis of personality disorders in learning disability. METHOD: Selective review with computerised (Medline, Embase and PsychInfo) and manual literature searches. RESULTS: The variation in the co-occurrence of personality disorder in learning disability, with prevalence ranging from less than 1% to 91% in a community setting and 22% to 92% in hospital settings, is very great and too large to be explained by real differences. CONCLUSIONS: The diagnosis of personality disorders in learning disability is complex and difficult, particularly in those with severe disability. Developing consensus diagnostic criteria, specific for various developmental levels, is one way forward. Such criteria may need to include objective proxy measures such as behavioural observations and informant accounts.

The aim of the project was to evaluate the short‐term treatment outcomes of patients treated in a medium secure service for people with intellectual disability. A total of 138 patients, 77 discharged and 61 current inpatients, treated over a six‐year period were included in the audit. Information on demographic and clinical variables was collected on a pre‐designed data collection tool and analysed using appropriate statistical methods. The median length of stay for the discharged group was 2.8 years. About 90% of this group were discharged to lower levels of security and about a third went directly to community placements. None of the clinical and forensic factors examined was significantly associated with length of stay for this group. There was a ‘difficult to discharge long‐stay’ group which had more patients with criminal sections, restriction orders, history of abuse, fire setting, personality disorders and substance misuse. However, when regression analysis was done, most of these factors were not predictive of the length of stay. Clinical diagnosis or offending behaviour categories are poor predictors of length of hospital stay, and there is a need to identify empirically derived patient clusters using a variety of clinical and forensic variables. Common datasets and multi‐centre audits are needed to drive this.

BACKGROUND: Behavioural interventions conceptualise self-injurious behaviour (SIB) as developing from early repetitive behaviours through acquisition of homeostatic functions in regulating stimulation and subsequent shaping into SIB through socially mediated or automatic operant reinforcement. Despite high success rates, such interventions rarely completely eliminate SIB, and overall effectiveness has not increased since the 1960s. METHODS: Research (excluding studies of single genetic syndromes) on the early development, functional properties and phenomenology of SIB in persons with intellectual disabilities (IDs) published from 1999 to 2010 inclusive is reviewed. RESULTS: Despite evidence to support the operant shaping hypothesis, in some cases tissue-damaging SIB, especially head-banging, emerges at a similar or younger age than stereotyped behaviours or 'proto-SIB', often associated with tantrums following frustrative non-reward and/or abrupt situational transitions. Many young children show undifferentiated patterns of responding in functional analyses of SIB, and SIB is associated with aggression and impulsivity as well as with repetitive behaviour. CONCLUSIONS: One dynamic in the development of SIB may be Pavlovian conditioning of aggression, originally elicited by aversive events or frustrative non-reward, to stimuli associated with such situations. Integration into operant technology of interventions based on Pavlovian principles such as graduated exposure (with or without counterconditioning) to aversive stimuli may enhance the effectiveness of behavioural interventions.

Background Depression occurs commonly in people with Down's syndrome, although there is little published about this association. This study explores the limitations of Diagnostic Criteria for Research, based on ICD-10 (DCR) and DSM–III–R depressive criteria. Method Case note examination identified 42 adults with Down's syndrome who have sustained 56 depressive episodes. The clinical features are reported. Results All episodes were diagnosed as depression. DSM–III–R criteria for major depressive episode were met by 50% of the episodes. DCR for depressive episode of at least mild severity were fulfilled by 68%. Conclusions These criteria were unduly restrictive for this group. Commonly occurring symptoms are not included in the criteria, while certain criteria items never occurred. Criteria should be modified to facilitate future research.

BACKGROUND: For more than a century, the idea of particular personality/behavioural characteristics being associated with people with Down's syndrome has been explored, but with inconclusive results. METHOD: The Disability Assessment Schedule was used to ascertain the behavioural profiles of 360 adults with Down's syndrome and 1829 adults with learning disabilities of other aetiologies, who were the whole identified population within a defined geographical area. Comparison was made between the two total groups and additionally for the subgroups aged < 35 years and aged > or = 35 years. Comparison was also made with regards to cluster analysis findings. RESULTS: Despite an equal age and developmental quotient, the Down's syndrome group were less likely to demonstrate maladaptive behaviours. The behaviour characteristics of the adults with Down's syndrome remained constant in the younger and older age groups. Cluster analysis demonstrated adults with Down's syndrome to have an increased prevalence in cluster groupings with lower rates of maladaptive behaviours. CONCLUSIONS: This study confirms there to be a behaviour phenotype among adults with Down's syndrome. The reasons for this (e.g. genetic/psychological/social) require further research. Such research may establish a better understanding of the aetiologies of maladaptive behaviours among people with learning disabilities in general.

BACKGROUND: Previous reports have suggested that South Asian and white UK populations have different prevalences of intellectual disability (ID), related psychological morbidity and service use. The aim of the present study was to compare these rates among South Asian and white adults in Leicestershire, UK. METHOD: This cross-sectional study is comprised of two parts. The analysis of prevalence is based on data from all South Asian and white adults known to the Leicestershire Learning Disabilities Register in 1991, with population denominators being drawn from the 1991 census. The other analyses use data collected from the most recent semi-structured home interviews, carried out between 1987 and 1998, with 206 South Asian and 2334 white adults. RESULTS: The prevalence of ID in adults in Leicestershire is 3.20 per 1000 in South Asians and 3.62 per 1000 in whites. Among adults with ID, South Asians have similar prevalences of disabilities to whites and significantly lower skill levels. South Asians show similar levels of psychological morbidity, but make significantly lower use than whites of psychiatric services, residential care and respite care. South Asians use community services as extensively as whites, but feel that they have a substantially greater unmet need, especially with regard to social services. CONCLUSION: South Asian and white populations have similar prevalences of ID and related psychological morbidity. Culturally appropriate services for South Asian adults may need to focus on skill development and community care.

BACKGROUND: Aggressive challenging behaviour in people with intellectual disability (ID) is frequently treated with antipsychotic drugs, despite a limited evidence base. METHOD: A multi-centre randomised controlled trial was undertaken to investigate the efficacy, adverse effects and costs of two commonly prescribed antipsychotic drugs (risperidone and haloperidol) and placebo. RESULTS: The trial faced significant problems in recruitment. The intent was to recruit 120 patients over 2 years in three centres and to use a validated aggression scale (Modified Overt Aggression Scale) score as the primary outcome. Despite doubling the period of recruitment, only 86 patients were ultimately recruited. CONCLUSIONS: Variation in beliefs over the efficacy of drug treatment, difficulties within multidisciplinary teams and perceived ethical concerns over medication trials in this population all contributed to poor recruitment. Where appropriate to the research question cluster randomised trials represent an ethically and logistically feasible alternative to individually randomised trials.

OBJECTIVE(S): To assess the effects and cost-effectiveness of haloperidol, risperidone and placebo on aggressive challenging behaviour in adults with intellectual disability. DESIGN: A double-blind randomised controlled trial of two drugs and placebo administered in flexible dosage, with full, independent assessments of aggressive and aberrant behaviour, global improvement, carer burden, quality of life and adverse drug effects at baseline, 4, 12 and 26 weeks, and comparison of total care costs in the 6 months before and after randomisation. At 12 weeks, patients were given the option of leaving the trial or continuing until 26 weeks. Assessments of observed aggression were also carried out with key workers at weekly intervals throughout the trial. SETTING: Patients were recruited from all those being treated by intellectual disability services in eight sites in England, one in Wales and one in Queensland, Australia. PARTICIPANTS: Patients from all severity levels of intellectual disability; recruitment was extended to include those who may have been treated with neuroleptic drugs in the past. EXCLUSION CRITERIA: treatment with depot neuroleptics/another form of injected neuroleptic medication within the last 3 months; continuous oral neuroleptic medication within the last week; those under a section of the Mental Health Act 1983 or Queensland Mental Health Act 2000. INTERVENTIONS: Randomisation to treatment with haloperidol (a typical neuroleptic drug), risperidone (an atypical neuroleptic drug) or placebo using a permuted blocks procedure. Dosages were: haloperidol 1.25-5.0 mg daily; risperidone 0.5-2.0 mg daily. MAIN OUTCOME MEASURES: Primary: reduction in aggressive episodes between baseline and 4 weeks using Modified Overt Aggression Scale. Secondary: Aberrant Behaviour Checklist; Uplift/Burden Scale; 40-item Quality of Life Questionnaire; Udvalg for Kliniske Undersøgelser scale; Clinical Global Impressions scale. Economic costs recorded using a modified version of Client Service Receipt Inventory for 6 months before and after randomisation. RESULTS: There were considerable difficulties in recruitment because of ethical and consent doubts. Twenty-two clinicians recruited a total of 86 patients. Mean daily dosages were 1.07 mg rising to 1.78 mg for risperidone and 2.54 mg rising to 2.94 mg for haloperidol. Aggression declined dramatically with all three treatments by 4 weeks, with placebo showing the greatest reduction (79%, versus 57% for combined drugs) (p = 0.06). Placebo-treated patients showed no evidence of inferior response in comparison to patients receiving neuroleptic drugs. An additional study found that clinicians who had not participated in clinical trials before were less likely to recruit. Mean total cost of accommodation, services, informal care and treatment over the 6 months of the trial was 16,336 pounds for placebo, 17,626 pounds for haloperidol and 18,954 pounds for risperidone. CONCLUSIONS: There were no significant important benefits conferred by treatment with risperidone or haloperidol, and treatment with these drugs was not cost-effective. While neuroleptic drugs may be of value in the treatment of aggressive behaviour in some patients with intellectual disability, the underlying pathology needs to be evaluated before these are given. The specific diagnostic indications for such treatment require further investigation. Prescription of low doses of neuroleptic drugs in intellectual disability on the grounds of greater responsiveness and greater liability to adverse effects also needs to be re-examined.

BACKGROUND: Although many adults with learning disabilities show features of autistic syndrome, there have been very few population-based studies. We explored the prevalence of autistic traits and their association with maladaptive behaviours in a geographically defined population of adults with learning disabilities. METHOD: The carers of 2201 adults with learning disabilities were interviewed, and information was sought concerning aspects of their behaviour and ability. Individuals were scored according to the number of core autistic traits displayed. The prevalence of autistic traits was examined in respect of aspects of behaviour and ability. RESULTS: Autistic traits were common among adults with learning disabilities. Those with a higher number of autistic traits were more likely to be profoundly learning disabled and demonstrate a wide range of challenging behaviours. CONCLUSION: Many adults with learning disabilities demonstrate autistic traits. The relationship of autistic traits with challenging behaviour has major implications in service planning and delivery.

A review of 23 studies investigating the prevalence of Behavioural and psychological symptoms of dementia (BPSD) in the general and learning disability population and measures used to assess BPSD was carried out. BPSD are non-cognitive symptoms, which constitute as a major component of dementia regardless of its subtype Research has indicated that there is a high prevalence of BPSD in the general dementia population. There are limited studies, which investigate the prevalence of BPSD within individuals who have learning disabilities and dementia. Findings suggest BPSDs are present within individuals with learning disabilities and dementia. Future research should use updated tools for investigating the prevalence of BPSD within individuals with learning disabilities and dementia.

A 38-year-old man with a moderate mental handicap and Asperger's syndrome is described. His transvestism and history of offending behaviour is interpreted in the light of this.

Abstract This study aimed to develop a theoretical understanding of the factors predicting psychological morbidity in patients planning IVF treatments, using Leventhal et al.'s Self Regulation Model. Fifty patients attending assisted conception units completed a demographic questionnaire, the Illness Perception Questionnaire—Revised, the Brief COPE and the Hospital Anxiety and Depression Scale. Results showed that mean anxiety and depression scores did not fall into the clinically significant range, although 42% of patients did score in the clinical range for anxiety. Hierarchical multiple regressions, examining the relationships between illness perceptions, coping and distress, revealed that both illness perceptions and coping strategies predicted anxiety and depression. Implications of the research are presented with suggestions for clinical interventions.

BACKGROUND: There has been a policy shift away from hospital to community in the services of all those with psychiatric disorders, including those with intellectual disability (ID), in the last 50 years. This has been accompanied recently by the growth of assertive outreach services, but these have not been evaluated in ID services. METHOD: In a randomized controlled trial we compared assertive outreach with 'standard' community care, using global assessment of function (GAF) as the primary outcome measure, and burden and quality of life as secondary measures. RESULTS: We recruited 30 patients, considerably less than expected; no significant differences were found between the primary and secondary outcomes in the two groups. The differences were so small that a Type II error was unlikely. CONCLUSIONS: Reasons for this lack of specific efficacy of the assertive approach are discussed and it is suggested that there is a blurring of the differences between standard and assertive approaches in practice.

Background Preliminary studies have indicated that training staff in Positive Behaviour Support (PBS) may help to reduce challenging behaviour among people with intellectual disability (ID). Objective To evaluate whether or not such training is clinically effective in reducing challenging behaviour in routine care. The study also included longer-term follow-up (approximately 36 months). Design A multicentre, single-blind, two-arm, parallel-cluster randomised controlled trial. The unit of randomisation was the community ID service using an independent web-based randomisation system and random permuted blocks on a 1 : 1 allocation stratified by a staff-to-patient ratio for each cluster. Setting Community ID services in England. Participants Adults (aged &gt; 18 years) across the range of ID with challenging behaviour [≥ 15 Aberrant Behaviour Checklist – Community total score (ABC-C T )]. Interventions Manual-assisted face-to-face PBS training to therapists and treatment as usual (TAU) compared with TAU only in the control arm. Main outcome measures Carer-reported changes in challenging behaviour as measured by the ABC-C T over 12 months. Secondary outcomes included psychopathology, community participation, family and paid carer burden, family carer psychopathology, costs of care and quality-adjusted life-years (QALYs). Data on main outcome, service use and health-related quality of life were collected for the 36-month follow-up. Results A total of 246 participants were recruited from 23 teams, of whom 109 were in the intervention arm (11 teams) and 137 were in the control arm (12 teams). The difference in ABC-C T between the intervention and control arms [mean difference –2.14, 95% confidence interval (CI) –8.79 to 4.51; p = 0.528] was not statistically significant. No treatment effects were found for any of the secondary outcomes. The mean cost per participant in the intervention arm was £1201. Over 12 months, there was a difference in QALYs of 0.076 in favour of the intervention (95% CI 0.011 to 0.140 QALYs) and a 60% chance that the intervention is cost-effective compared with TAU from a health and social care cost perspective at the threshold of £20,000 per QALY gained. Twenty-nine participants experienced 45 serious adverse events (intervention arm, n = 19; control arm, n = 26). PBS plans were available for 33 participants. An independent assessment of the quality of these plans found that all were less than optimal. Forty-six qualitative interviews were conducted with service users, family carers, paid carers and service managers as part of the process evaluation. Service users reported that they had learned to manage difficult situations and had gained new skills, and carers reported a positive relationship with therapists. At 36 months’ follow-up ( n = 184), the mean ABC-C T difference between arms was not significant (–3.70, 95% CI –9.25 to 1.85; p = 0.191). The initial cost-effectiveness of the intervention dissipated over time. Limitations The main limitations were low treatment fidelity and reach of the intervention. Conclusions Findings from the main study and the naturalistic follow-up suggest that staff training in PBS as delivered in this study is insufficient to achieve significant clinical gains beyond TAU in community ID services. Although there is an indication that training in PBS is potentially cost-effective, this is not maintained in the longer term. There is increased scope to develop new approaches to challenging behaviour as well as optimising the delivery of PBS in routine clinical practice. Trial registration This study is registered as NCT01680276. Funding This project was funded by the National Institute for Health Research (NIHR) Health Technology Assessment programme and will be published in full in Health Technology Assessment ; Vol. 22, No. 15. See the NIHR Journals Library website for further project information.